Genetic Testing for IRDs

A Global Landscape

A genetic diagnosis is a requirement for IRD patients to be considered for inclusion in research studies, clinical trials and access to emerging therapies. Retina International has observed several barriers to accessing genetic testing and genetic counselling for IRDs which vary geographically.

Retina International conducted two global studies to investigate and generate data on the current genetic testing and counselling landscape in terms of clinical processes and patient experience. Retina International also undertook a patient taskforce initiative to develop global patient consensus and co-create universal policy indicators for access to a genetic diagnosis. Further information on these three initiatives and publications can be accessed in the links below.